So Much For My "Good" Day

This morning I had to shlep up to Newark (an hour drive- and very bad neighborhood), with my mom, to go get my psychiatric evaluation done. Luckily, we didn't hit any rush hour traffic, or get lost on the way. We even got a great parking space, and the facility was very wheel chair accessible. Despite hating getting up early, and the long drive, I'm grateful to Jeanne (the palliative care consultant I've been talking with, for several months now) for referring me to Dr. Shihabuddin. She is not only already affiliated with the VNA, but she also accepts Medicare and has experience working with hospice patients.

Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed.

That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting.

Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go.

After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.

The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes.

My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed.

Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out.

After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore.

I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them.

When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive.

When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.

The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken.

I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.

So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him.





- Posted using BlogPress from my iPad

My Pets

My pets are one of the few things that make me smile. Ordinarily, I'm a cat lover. Growing up, I had two households (my dad & stepmom's house, in NJ and my mom & stepdad's house in PA). I lived primarily with my dad, and stepmom, and visited my mom & stepdad on weekends and during school vacations. At my dad's we had a strict "no mammal" pet policy. My dad maintained a fish aquarium, and my stepmom has two parrots (one Amazon , name Rocky, and a Goffin Cockatoo, named Noel). While the parrots can be amusing, only my stepmom can actually handle Rocky, and Noel is a bit neurotic. Neither of them provided me, with any companionship. At my mom's we always had a ton of cats, outside dogs, and various small critters, over the years (guinea pigs, lizards, parakeets and rabbit). I was especially attached to three cats, whom I grew up with, Nusy, Gizmo and Mitzoo. My mother had Nusy, every since I was a baby. We got Gizmo when I was around four, and Mitzoo when I was about seven. I was most attached to Gizmo, who lived the longest (she died shortly after I began going to college), and I spent the most time with. She was super lovable, affectionate and sweet. Even as an old cat, she had the cutest high pitch mew, that sounded just like a kitten.

I love dogs, but I've always preferred cats. As an adult, most of my boyfriends had dogs, and both my little sisters, and brother each had dogs. I've been around them nearly my whole life, love playing with them, and being around them, just never owned one of my own, until recently. I'm an animal lover, in general, and like all kinds of little critters. I especially love little, fury mammals. I enjoyed playing with my guinea pigs, at my mom's when I was young, and always felt I was missing something, not having a pet of my own, at my dad's. It wasn't until I was almost finished with college, that I managed to convince my dad, to let me break the "no mammal" rule, and bring home a pet. I adopted a chinchilla, who I named Tskushi (after an anime character), from my mentor, Mr. Grace. He had been my high school art teacher, and mentor for my junior filed work, and student teaching. When I found out he had experience breeding chinchillas, and had a few up for adoption, I just HAD to have one. At first I convinced my boyfriend at the time, to let me keep her at his place, but later moved her home, to my parents house. I thought my dad would pitch a fit, but instead he fell in love her, and played with her, and enjoyed her company, just as much as I did. In fact, when I first brought up the idea of moving out, he asked if I wouldn't mind leaving Tskushi behind, because he'd grown so attached to her.

When I moved out and got my first apartment, one of the most exciting aspects to my new found freedom, and independence was getting my own cat. I adopted a pretty, little grey and white cat, from my grandparents. They had inherited her from a friend, who had initially just asked them to watch her temporarily. They already had two other cats, and I felt like they were struggling to care for them, so I offered to take "Tinkerbell" who I later changed her name to Bella. I moved into my first place in April, 2005 (precisely six years ago, today). I only got to enjoy living in my apartment, and with Bella, for two months, before my injury. Even though our time together was short lived, I quickly fell in love with her, and really enjoyed her company. She had a big personality, and demanded a lot of attention, which I kind of liked. She's was super chatty, and would meow my ear off, as soon as I got home from work, every day.

The funny thing was, I didn't realize that she was pregnant when I adopted her (she was only around seven months old, had a small frame, and had been an indoor cat). Both her, and my grandparents' other cat, were not neutered, and had apparently conceived a kitten, just before I took her. Three weeks before my accident, I came home to a big surprise. I had just finished bar tending school (I had lined up a bar tending job for summer employment), and came home late that night. I opened the door to my apartment, and Bella greeted me, as usual, meowing away, about who knows what, when out of her little cubbyhole, crawls out a small, grey thing. At first, I was shocked, and thought maybe she's somehow caught a mouse. I crouched down, to get a better look, and realized it was a kitten! Immediately, I called my boyfriend (who was already on his way over) and started freaking out, and frantically searching my apartment for the rest of the litter. We searched high and low, and found no signs of any other kittens. I thought that was bizarre, and called an emergency vetinary hotline, to get advice. They told me, it could take hours, in between labor, and to stay up with her, and monitor her through the night. By the next morning, we still only had one, small grey kitten, so we took mother, and daughter to the vet to get examined. They took some xrays and determined that Bella had an abnormally small "litter", of one, most likely due to the fact that she and the father cat, were both very young in age. I was pleased, that they were both healthy, and decided to keep the new addition to the family. We named her Rosa (the initial choice was "Axel"-based of the lead singer from Guns'n'Roses-but given the fact we found out she was a girl, we came up with a compromise). Rosa had just opened her eyes, and had begun running around when I got hurt. When my apartment got closed down, my best friend Erin adopted them both. Now Erin, and her husband have Rosa, and my grandparents have Bella. I've had the chance to "cat sit" for them, various times, throughout the past six years.

After my accident, I spent a year and a half living in a nursing home. In January 2007, I got myself out, and into an apartment of my own. For the first year living here, I lived with a roommate. Steve and I had been high school classmates, and had got back in touch, shortly before my accident. He really helped me out, by agreeing to room with me. Although I have no functional mobility, the state only provides me with eight hours of having a home health aide, per day. It was crucial for me to have a roommate, to have the safety, and security, of having someone here at night, in case of emergency. Steve and I got along well, and I enjoyed our time living together. As an added bonus, Steve brought along his cat Maynerd (aka Manny) to keep us company. I really enjoyed having Manny around, especially during the day, when I was alone in the apartment by myself.

After living here for about a year, Steve and his girlfriend (now wife) decided they wanted to get a place of their own. I had a new roommate lined up, but he backed out at the last minute, leaving me in a tight spot. I asked my sister Kati, if she wouldn't mind coming to stay with me for a while. She agreed, and moved in with her dog Precious, who I knew, since before my accident. Precious is a golden retriever, cocker spaniel, corgy mixed breed. She's super affection, lovable, mild mannered and very well behaved. Having her here has been really great. She's super loyal, and loves to keep me company. She often lays near my wheelchair, or beside my bed. Everyone that meets her, just loves her.

Once Manny had left, I felt like I really missed having a cat. I discussed the idea of getting one, with Kati, and my mom, and they both agreed they'd be willing to help me take care of one. We adopted Tommy, around Halloween, 2008. I had searched for a while, online and ended up finding him through his foster family. Since we already had Precious, it was important for me to adopt a "dog friendly" cat. Tommy is just that! In fact, we think he thinks he IS a dog. He plays well with dogs, is EXTREMELY outgoing, curious & smart. He even wears a harness & takes walks with the dogs (I'm serious).

Tommy is a little too smart! He can open all of the doors in my apartment, so we had to change my doorknob from a lever, to a round knob. When I first got him, I had an environmental control unit, that I could control, by tapping a button, on my pillow, with my head & give verbal commands. If I needed help, I'd tap the button, and say "get Steve", which would in turn, sound an alarm in Steve's room (now my sister's room). For some reason, instead of just pouncing on my sister, and waking her up, he'd come barreling into my MY room, meowing for food, at 5 or 6 am. Then, I'd sound the alarm, and he'd go charging off, towards the second bedroom. The routine got old, fast, and I opted for the different knob, which he's since given up trying. He will on occassion bust into the bathroom, on guests, if they forget to lock the door. He's one of a kind (my family has owned many, many cats). He got very attached to my mom (who plays with, walks, & feeds him), and could care less about me. He is catlike in the one aspect, that he requires a 50/50 relationship. I can't offer him much, so he's not interested in me. That's the main reason I got Naama.

Naama is my very first dog. She is a Miniature Pinscher, with a BIG personality! I always thought if I were to get a dog, I'd want a small, short hair breed. Being a cat person, I like the idea of being able to carry my pet, and be able to have my pet on my lap, and in bed with me. She was a spur of the moment purchase. A friend of mine, who I met online (playing Maple Story) had come to visit. We took her to see my art exhibit, and then to a local mall, to my favorite restaurant chain, the Rainforest Cafe. We made the mistake (in a good way) to stop in the pet store on the way out & I fell in love with Naama. I'd always wanted a mini-pin & really wanted the companionship. I named her after my friend, Naama. She's the best thing (being) I ever bought. She's super cute & sassy. She makes me laugh. She's super spoiled, and she knows it! She's definitely got a "diva" complex, and can at times, be a total drama queen! She's the closest thing I have to a child, and I love buying her cute little outfits to wear. She's got quite a wardrobe, and I get a kick out of seeing her prance around, in her clothes. She's been great for Tommy, and they play well together. They can both get pretty hyper, and Precious is too old to be bothered. Tommy and Naama make good playmates and I just love watching the two of them interact. Having pets has definitely been a spirit lifting experience for me. They can make me smile, even on my worst ways. I'm truly thankful for their love and companionship.

- Posted using BlogPress from my iPad

Out & About

I started thinking about my previous blog, about 9/11 and how fast life can change, and retelling my memories of that day made me reminisce about all the fun I used to have traveling into NYC, and going out, in general. Prior to my accident (June 2005), I was constantly on the go. I loved to travel, and made regular trips into NYC and PA. Half of my family lived in the Pocono mountains of Penssylvania, and one of my best friends and ex-boyfriend lived in other parts of PA. I'd been making the two hour trip, to and fro the Poconos since my mom moved there, when I was nine. Two hours in a car was no big deal for me, and driving the route to my family's house was second nature. Besides that, I just enjoyed traveling. In college I made annual trips down to Orlando, to Disney World, and a couple of road trips up to Maine. Once I graduated college (and started making real money), I started making trips outside the country. In the years just prior to my accident, I went to Italy, Puerto Rico, and Canada. I've always enjoyed going out. I regularly dined out, went shopping, to the movies, to the beach, to parties, dancing, site seeing, and a variety of other things.

I would love to see more of the world, and go out more, but most times, the cons of paralysis, outweigh the pros. I find myself doing less and less, because the memories are too painful, the compromises are too many, and/or the preparation, planning, and health concerns, make the experience more annoying, than enjoyable. Most people don't realize, or consider the amount of effort that goes into to everything I do. Just getting up, into my wheelchair everyday, requires someone else, bathing me, dressing me, grooming me, feeding me, and physically transferring my body. All of that has to be done, just for me to be able to get into a car, let alone determining if places are accessible, or if I'll need additional accommodations. I, in the meantime, am always concerned with the unpredictability of my body (my tollerance for sitting, blood pressure, pressure sores, skin breakdown and incontinence issues). I have concerns in the back of my mind, that the average thirty year old, just doesn't have. It's not as simple as just rolling out of bed, hoping into the shower and throwing some clothes on. I can't just pick up and go on a whim, because I'm completely reliant on others. On top of the logistics, and physical challenges, I'm constantly weighing the emotional pros and cons of everything I do. Most times, the enjoyment factor doesn't cut it for me, and I rather not go through all of physical trouble, to do something that will ultimately upset me, more than entertain me. Unfortunately, most of the enjoyments of my "old life" are more painful than pleasurable, and therefore I avoid them.

I've flown to FL since my accident (twice).Both trips were to Disney World. The first trip was for my best friends wedding, and was a short stay, mainly comprised of activities within the resorts. The second trip was for eight days and we stayed at a resort and went to the theme parks & Downtown Disney. I used to Disney go every summer (as an adult, on my feet) and am extremely familiar with most of the Disney World attractions. Let me tell you, it's like night & day, traveling paralyzed, versus traveling able bodied. Disney has made a lot of accommodations for handicapped people, and much of the transportation and certain attractions are already setup with accessibility in mind. Even so, navigating large crowds, restaurants and shops, have not been very pleasant experiences for me, in my wheelchair. Not to mention the unique experience of flying paralyzed, which brings with it a ton of unpredictabilities, like lay-overs, and delays, which can be extremely taxing, and dangerous, because of the risk for skin breakdown. Let's not forget, all the preparations that need to be made in advance (renting equipment, hiring or bringing a nurse/aide, medical supplies, accessible transportation, needing transfer assistance, etc.).

You'd think you would stand out, sitting in a wheelchair, and people would be mindful, and move out of your way, or help you, but I've noticed that to be the exact opposite of reality. People are so wrapped up in themselves, that they have literally tripped over me, crashed into me, stand obliviously in my way and create obstacles, more times that not. Stores and restaurants often cram the maximum mount of merchandise and/or furniture into their space, which makes it near impossible to navigate, without bumping into displays, forcing people to move, or having to rearange things, just to get by.

Going into NYC used to be my second most favorite outting, outside of trips to PA. I haven't actually been into the city, since my accident. It's something I miss very much. I've been wanting to go for some time now. I'm just so accustomed to going by train, and subway by foot, that I'm a bit intimidated at the thought of figuring out how to get around in a wheelchair. Driving into the city is a headache and more expensive. I do miss going to the museums, walking around Time Square and hanging out in Chinatown. It's not that it's impossible, it's just a hassle having to come up with all of the routes I'd need to take. Not to mention, I'd be relying on someone else for transportation & assistance.

NYC is not nearly as wheelchair friendly as Disney. It is noisy, messy, crowded and fast paced. Its a city, not a theme park, so here aren't designated people, every ten feet, to help you out. While New Yorkers aren't as obnoxious & rude as tv portrays them, they are busy living their day to day lives, not paid employees, ready & willing to make your trip pleasant. Certain places, like Museums, plays, or Madison Square Garden, would probably be the least hassle, and the most accessible. I've thought of attempting to go into the city so many times, I just haven't followed through with it, yet. Plus, I feel as though there are just certain aspects of the city that I won't be able to enjoy anymore. I can't imagine having fun in my chair in Chinatown. It's challenging enough to keep up with hustle & bustle on your feet. The shops are mostly all tiny, cramped & cluttered. Many shops have steps, or a small step, or curb to tangle with and I'd barely be able see a thing above the crowds. It's always congested, and the sidewalks are full of hazards, like merchandise for sale, and garbage.

I used to LOVE going to mall. If you've ever been to New Jersey, it's evident that we Jerseyans love our malls. You can't drive through our state without seeing a huge mall, about every 15 miles. I don't mean strip malls, or outlet malls either. I'm talking about, multi-level, indoor, several big name department stores, food court, sit down restaurants, map necessary, shopping malls. From the moment I got my drivers license, until the day of my accident (1997-2005), I can honestly say, I went to a mall at least once a week. As a teenager, the mall is a fun place to hang out. In college, my boyfriend spoiled me with shopping. As a teacher, I was earning a real salary, and was single, with money to spend. I'm not rich, nor I have ever been in debt (besides medical bills, post accident), but I've always enjoyed to shop. I enjoy window shopping, buying gifts for other people, and used to adore clothes shopping, for myself. Since my accident however, I tend to avoid the malls and do almost all of my shopping exclusively online.

I was never bothered by crowds, until I was in a wheelchair. I'm partially bothered due to self consciousness (I have have always been that way, in terms of comparing myself to others, but had much more confidence in my physical appearance before my accident. My entire self image has declined drastically, since my accident. So much of my body has changed, and is out of my control to maintain, and/or utilize, that it often feels foreign to me.), but more so by the simple fact that it has become difficult and annoying to get around. As I said earlier, most stores are so crowded with stuff I can barely get around, and it bothers me, not being able to pick things up, get close enough to see things, or be able to try clothes on. It's also especially embarrassing if people need to move, or move displays for me to pass through. I feel as though it draws unwanted attention, and further emphasizes me disability.

Eating out was another favorite past-time, that I rarely do anymore. Just the fact that I can't feed myself, is enough to make the experience less enjoyable. It is embarrassing, to have to be fed, like a baby, in front of countless strangers. Not only do I get annoyed, because I can't eat at my own pace, it's equally annoying for whoever is feeding me. Neither person gets to really enjoy their meal. Someone always ends up eating cold food. Plus, there are many foods that aren't designed for a fork & knife, and become very tricky to eat, when someone else is trying to feed you. Foods like, cheese steaks, subs, spaghetti, ice cream cones, candy apples, french fries, popcorn and burgers, are sloppy, awkward and meant to be held, bit, or tossed into your mouth, by the handful. It's not enjoyable, having to cut certain foods that are meant to be bit, and be able to enjoy the mixture of all the layers of flavor. It's awkward eating foods that are dipped, or have heavy sauces, or dressings. Messy foods just draw more attention, and add embarrassment to the situation. Not being able to wipe my mouth, or clean my own face is bothersome. Most restaurants are too crowded to easily maneuver the wheelchairs, and most tables are impossible to get close too, because of height. Having to always sit at the end of a booth, sideways, or protruding out, from the rest of the group, makes me feel more singled out, and self conscious. Having to always direct what I want next, or when I'm thirsty is tedious. I hate having to always drink from a straw, and ask for a sip. For me, paralysis has drained the enjoyment out of the actual "dining" experience. I still enjoy the food, I just hate the "dining." I much rather order to go, and eat in the lower stress environment of my home, in private.

I challenge all of my able bodied readers to experience going out in a wheelchair first hand. Go to the mall and rent one of the chairs, or scooters for a few hours, and see what I mean. Have your significant other push you around, and see things from my perspective. Try to maneuver inside of a department store, and crowded shops, like Claire's, Spencer's or Brookstone. Go out to eat, and let your friends feed you. Even without a wheelchair, you can experience being fed. I don't mean one, or two romantic looking bites either, I mean, a full meal, with a beverage (one person using hands, and the other not). I guarantee, it'll only take one outing to understand what I mean, and realize why certain things are no longer enjoyable, or worth it, to me. It's not just a matter of wanting to be anti-social, or cooped up in my apartment. It's a matter of what is no longer pleasurable, or fulfilling.

Proposed budget cuts could force disabled New Jerseyans into nursing homes.

For those of you that are disabled, living in New Jersey & receive PCA (personal care services), such as home health aides, you should know that Governor Christie's new budget proposes to cut reimbursement by 17%. The program I use for paying my aides, Personal Preference recently sent all participants a letter notifying us about this about this possible change. If it passes it will mean a $2.10 per hour decrease to home health aide salaries. That is outrageous! I'm writing to my legislators online & through snail mail. You can find your legislator's information at www.njleg.state.nj.us. If you or your loved ones may be effected by this proposed cut, I urge you to write as well. Tell legislators your story & how this budget cut could impact you!

Here is my letter, if you wish to use it as an example:

"Dear Legeslator,

Hello. My name is Christina Symanski. I'm a twenty nine year old resident of Freehold, New Jersey. I have lived in New Jersey my entire life, mostly in Union and Middlesex counties. I graduated with from Kean University in 2003, with my B.A. in Fine Art (education certification K-12). After college, I worked as an art teacher in the New Jersey public school system (Lakewood and East Brunswick) for two years. I would still love to be teaching in East Brunswick; unfortunately my career was cut short in 2005 due to an accident. In June of 2005 (two weeks before the school year was over) I broke my neck in a swimming accident and was permanently paralyzed from my chest down.

Paralysis has robbed me of independence, freedom, privacy, modesty, career, relationships and many of my dreams for the future. I went from being a perfectly healthy, able bodied, working member of society, to being completely dependent on others, over night. I no longer have control of any functional movements of my body. I am completely at the mercy of others for all of life's daily needs. Living with paralysis is something you must experience, to fully understand how awful it is and how many small things we take for granted, when we are healthy (a perfect example would be having an itch you cannot scratch). High level spinal cord injuries, like mine, affect every single aspect of life. As of right now, there is no cure, so I am forced to do the best I can, by moving forward with my new life.

Life with paralysis has been a day to day struggle. My days are filled with pills, home health aides, nurses and medical equipment. I rely heavily on others to help me accomplish the simplest of life's tasks, such as dressing, eating, using the restroom and bathing. It has been a difficult and drastic adjustment from being totally independent and on my feet. I often look back and wonder how I've survived thus far.

I think one of the key components to my personal recovery has been the ability to live in my own home. Shortly after my accident and hospitalization, I moved into a nursing facility. At the time, I was newly paralyzed, terrified and did not have the strength or the knowledge to live on my own, and had no other alternative. The year I spent in the nursing home was by far the worst year of my life. Imagine losing the ability to care for yourself, your job, your home, and your freedom over night, while living in a strange environment, with no privacy and nothing to comfort you. Every day I lived in the facility I felt as though I had never left the hospital. It was a little over a year of continuous insomnia, absolutely no privacy (I shared half a room, which was divided by a curtain) and being told how and when I could shower, sleep and eat. I would not send my worst enemy to live in a nursing home. The entire experience drained the little bit of hope and happiness I had left and I knew I would not survive living there. I made it my goal to get out and back into the community. Through hard work, determination and a lot of help from a handful of state employees (Division of Disability, Medicaid, Dept. of Health and Senior Services and HUD), I achieved that goal.

Living in the community, in my own home has made my life so much better. Living in my own apartment has given me back some of the freedoms I'd lost, privacy (as much as possible), and the ability to be as independent as I can. I feel more in control of my own life and have the freedom to manage my care on a one on one basis, and on my terms. I feel like a member of society again. I have a much higher sense of self and morale. I have proven to myself that there can be life after paralysis; not just sitting around passing time, but an actual good quality of living. Since I've been home, I've done my best to contribute and give back to the community. I joined the Association for Mouth Painting Artists, and have had several art exhibits here in New Jersey. My story has been featured in the Star Ledger, Asbury Park Press, and several other publications. I've been on New Jersey channel News12 and on satellite TV. I have made it my mission to use my story to help raise awareness of spinal cord injuries and paralysis.

I know that if I were still living in a nursing facility today, I'd surely be a shell of the person I was (and am). I'm certain I would have lost my will to live, if I were still there. For me, it is quality of life that counts, not quantity. No one should have to have a lower quality life, when improvements are possible and are available. When I was planning to leave the nursing home I was shocked to find all of the wonderful programs and services that are available to people with disabilities, here in New Jersey. I am extremely grateful to the state for providing me with the resources I need to survive. That said, I am extremely worried and upset over the proposed budget cuts to PCA (personal care assistance) services, in Governor Christie's upcoming budget.

I currently receive 56 hours of care per week, with a home health aide and 3hours every other day with a nurse. My aides and my nurses are my lifeline. Without them, I'd have no way to care for myself. When you think about it, eight hours each day is not much, if consider the fact I cannot use my limbs. Yet, with proper management and supplies, I make do. My aides rely on me, just as much as I rely on them. I am their employer and they count on me for a reasonable salary and hours, so that they can support themselves. All of my care falls under a Home and Community Based waiver and I receive both Medicaid and Medicare. I pay my rent and bills with my disability benefits and help through HUD. Everything I need for my personal care (medicine, aides, nursing, supplies, doctors and equipment) is covered by a set budget of $9881 per month, which is provided by the Medicaid waiver and Medicare. On the contrary, when I lived in the facility, the state was spending approximately $500 per day for my care (around$15,000 per month). I'm much happier and healthier in my home, than in a facility and can receive the same amount of care for less cost to the state.

If Governor Christie's budget cut passes, that will mean a 17% decrease in funding to the reimbursement rate for Medicaid home health services. This is not acceptable, nor is it a fiscally sound decision. A decrease in funding would force programs, like Personal Preference, through which I receive my home health aides, to cut my workers’ salaries by $2.10 per hour. My employees cannot afford a cut in their salaries and I do not have any other means to pay them. This proposed budget cut, could make it impossible for people like me to retain home health services. I cannot live on my own without those services. Cutting my employee's salaries could potentially force me (and many other disabled citizens) to move back into a nursing facility. It makes no sense to do this. Those of us living in the community need to be able to pay our aides competitive rates, comparable to nursing facilities, in order to keep the reliable employees that we desperately depend on. Sending people back into facilities would reduce their quality of living and increase the cost to Medicaid. It is a lose-lose proposal.

I'm asking from the bottom of my heart and on the behalf of all the disabled people that cannot express themselves, to please consider eliminating this proposed cut. It will not result in savings. It will force home health workers to take jobs (or become unemployed if they are not certified to work in facilities) in the nursing homes and it will force many of us in the disabled community, to follow their lead. It is a fact that nursing home costs outweigh home health costs. Please review these facts and put yourself in my shoes. I was perfectly healthy five years ago and now I'm not. I put my trust in the government and my elected officials to do what's best, on behalf. Please keep my situation in mind (and the hundreds, if not thousands of other disabled New Jerseyans) and urge Governor Christie to do away with this particular budget cut. Cutting home health services will only cut into my quality of life, it will not decrease the deficit.

Thank you for your time and consideration. I'm trusting you will do what's right.

Sincerely,
Christina Symanski

www.christinasymanski.com"

Acceptance

I often read posts from the Care Cure & Christopher and Dana Reeve Foundation forums. Both websites are dedicated to spinal cord injury and paralysis awareness and research towards finding a cure. Both websites also have active online communities of people living with paralysis, caregivers and medical & mental health professionals. It's helpful to be able to read how other people deal with paralysis and know that there are other people that can understand your situation. I contribute my opinion, information and advice from time to time. I'd encourage anyone effected by paralysis to check out both websites.

The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"

I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.

I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:

I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.

I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).

No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.

Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.

It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.

At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.

Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.

Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.

I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.

I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.

Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.

Sent from my iPad

- Posted using BlogPress from my iPhone

iPad Review (with people with disabilities in mind)

I've had my iPad for a week now & have to say, I'm loving it! I haven't gone nuts downloading a ton of apps, but I do have a variety that I think are worth mentioning. There are a few things I'd definitely like to see in the next generation of iPads and a few flaws, that Apple could probably address with software updates.

Overall, the functionality is pretty intuitive and I can do most things that anyone else could. There are a few multi-finger gestures that I can't do, but for the most part, I've been able to navigate quite well, using my stylus. Certain functions can be done in multiple ways, for example, you can enlarge or shrink pages by pinching and pulling at the corners or you can double tap. I have noticed that the iPad is very particular and is programed to sense tiny differences in movement, pressure and the duration of your finger or stylus is on the screen. Because it is so sensitive, it does seem to work more accurately and consistently with fingers, versus the stylus. There have been many times that I've been using it and I have to try to push the same area two or three times, before I get it just right. It can be annoying at times. I think the easiest solution would be, for Apple to design a capacitive stylus with a more precise tip. All of the capacitive styluses that I've come across (including the Pogo that I'm using) have a thick tip, about the circumference of a pencil eraser. If they could somehow narrow the tip to a point, it would make it easier to be accurate.

As far as accessibility to goes, I really think Apple should include some sort of override setting for the stylus. It would solve the problem of not being able to do multi-finger gestures and it would help the iPad to recognize the difference between stylus and fingers. I haven't tried the Voice option yet, but the ability to change font size and adjust the volume and brightness, in the settings menu is helpful. I'm very pleased that there aren't many external buttons. The only other "problem" I've come across in concerns of accessibility is that, some apps rely on movement and/or do not self adjust the orientation. In terms of being accessible, Apple should consider the fact that many people with disabilities cannot pick up, or move the iPadthemselves. I realize that there are only a small amount of iPad users with this unique problem, however, it is a concern to those of us dealing with paralysis and motor skill deficiencies. It's a minor issue that could most likely be easily resolved by giving users the option of shutting of kinetic features and/or individual apps could give users alternative means of controlling the device. 

The iPad technically, has no "correct" orientation, and is supposed to adjust itself based on the movement of the iPad itself. You can choose to lock the orientation if you wish, however some apps (mostly games) rely on kinetics, such as Nintendo Wii. In the game Sims3, for example, you need to shake the iPad as part of earning cooking skills. Since I can't shake, or handle my iPad, I'm destined for virtual cooking failure. It would be simple for creators to allow tapping as an alternative; just as lazy people have the choice to play their Wii from the couch. Kinetic gaming features are cool, but I don't see any justification for them being absolutely necessary. Many of the current apps already allow for customization, so I don't see why Apple couldn't make the kinetic features optional.

A lot of the iPad apps are iPhone apps that Apple has tweaked for use with the iPad. The one glitch I've encountered in several apps, is that they are only setup to work in the "portrait" position. This means, you're forced to use the iPad vertically, and depending on how you have to position the iPadin order to use it, vertical might not be the most convenient orientation. I for one, use my iPad in the horizontal orientation, because the height is shorter than the width, thus making it easier for me to reach/touch the entire surface.The current apps that only work vertically, could easily provide updates to rectify the issue. Some of the TV sites like, ABC, TLC and Discovery Channel do not (yet) automatically self adjust, or the home page is vertical, while the videos can be watched in either portrait or landscape. I'm hoping more apps will update the iPad apps to work in both orientations. I find it ironic that there are (at times) unnecessary kinetic features embedded into games and yet, apps that should respond to movement, to auto-correct the orientation of the iPad don't always work. 

My only other complaint is the inability to view or use anything to do with Flash. I think this is a big mistake, as tons of very popular websites use Flash and aren't accessible on the iPad. No Flash means only having a limited access to the web; which stinks. I'll be using my iPad primarily from home, so I rely on my existing wireless network for internet access. However, I'd be ticked off if I was one of the thousands of people that are paying extra for 3G (access on the go) service. I can't see paying full price for internet services, if you don't have full access. Some of my favorite sites rely on Flash, like HULU and Facebook games (like Zynga and Slide games). You can also forget about playing huge multi-player games, like World ofWarcraft and Maple Story. I can't even access the social section of my own website, because it uses Flash. If I really want/need to access Flash websites, I can switch off to my laptop. Apple would like you to think that the iPad is a smaller, more convenient version of a laptop PC, but that isn't true. The iPad has the potential to replace traditional laptops in the future, but currently, there are too many missing capabilities to make the switch from a PC to iPad alone. Right now, iPad's capabilities are stuck in between the versatility of a PC and the limitations of specialized mobile gadgets, like e-books. That said, the things the iPad CAN do are pretty sweet!

Two of the best features of the iPad are it's compact size (smaller than the average magazine) and its full touchscreen. The iPad is definitely easier to lug around than a laptop, and easier to read, and operate than smart phones. My dad is always complaining about the ever shrinking size of electronic gadgets; he says, "they're designed for Leprechauns." I know myself, that trying to use my cell phone or other electronic devices are difficult to use, because of my limited mobility. I no longer have the dexterity or fine motor skills required to push buttons that are a quarter inch in size. I'm sure many people with disabilities, and the elderly, find it frustrating, not being able to read or accurately press buttons. The iPad is great, because it allows for customization. You can increase the size and type of font of text and easily zoom the screen in and out, which makes for much easier reading. The lack of buttons is also a plus. The touch screen is far easier to operate than pushing keys or having to scroll and select things with a mouse. If I want to type on a PC, using Microsoft's on-screen keyboard, I have to use mouse to select and press each key. The process is so tedious that it's not worth it for me to use. My iPad's on-screen keyboard is huge and I touch each key directly, as if I were using a traditional keyboard. Being able to type laying down gives me more time in the day to write, answer emails and surf the web. Before I owned the iPad, I was limited to only typing if I was sitting and only being able to use the mouse, if I were laying down. Now, I have more options to how I spend my day, because I have extra time to write. 

The other great features of the iPad are: e-reader, social networking, productivity, gaming, music, videos and creativity. Even though there are limitations to surfing the web, it's great to be able to check e-mails and keep up with social networking sites, like Twitter and Facebook. The e-reader feature is awesome, and has all the best qualities of the top three competitors. iPad gives users the freedom to download and purchase books from a variety of sources, so you can shop around for deals and freebies. The fact that it has a full color touchscreen, makes it feel more like you're reading an actual book or magazine. The advantage is, you can store thousands of books into it's small size, customize the font and look up words, with it's built in dictionary and search features. Not to mention, for someone like me, that has to turn pages with a stick and has an elaborate set-up (tables and book stands), every time I want to read, the e-books are a godsent. My iPad has taken out all the stress that comes along with reading and made me more motivated to want to read. 

If you get tired of reading, there are tons of fun games, which are all operated by touch, similar to the Nintendo DS. You can also save space withiTunes, since you can store tons of your CDs and movies. It's pretty amazing how much stuff you can carry around in such a small device. There's also lots of great productivity apps, that give you the ability to work on the go, manage/organize information and jot down ideas. One of my favorite apps is Sketchbook Pro, which lets me create art. I haven't had the freedom to sketch in a long time. For me, the annoyance of having to ask for help every two seconds, (for an eraser or changing colors) takes away the enjoyment of drawing. The iPad sketch book gives me the freedom to switch colors and textures, as well as to make corrections on my own. It's amazing how well the program simulates different mediums and it gives you the ability to create work in layers. I'd say it's a must have for any artist.

I realize the iPad is a bit pricey, for the average middle class person. The good news is that it does come in several versions; the cheapest runs around $500. If you already own a smart phone, you might want to wait and see what (if any) changes they make to the next generation of iPads. The originaliPad is sure to drop in price as newer versions get released. If you don't own a laptop or a smart phone, you really should take a trip the Apple store and check out the iPad. Also, if you're thinking about investing in an e-reader, it's well worth the extra $100-200, considering everything the iPad can do. I'd highly recommend the iPad for people with disabilities, especially those people that enjoy reading and/or writing. It can take the place of bulkier, assistive devices, that aren't as versatile or easy to use. Plus, the iPad gives the user freedom to switch between tasks independently. I'm always grateful to have anything that gives me back a sense of freedom or independence.

Going Out

As many of you know, I don't go out much these days. I basically stay inside all winter, as it's near impossible for me to withstand the cold weather. I'm usually colder than everyone to begin with, so even with the heat on at a normal level, I'm shivering. My inability to move around and poor circulation make it very hard to warm up. Unless it's something very important, I try to avoid making plans with friends that require me to leave my apartment. Luckily, there's plenty of holidays and birthdays to keep me busy. Every year it seems to get a bit harder to meet up with friends, due to the fact that almost all my friends are married and/or have children. Although, I'm grateful that my friends make the effort to visit me, given everyone's hectic schedules. I have a reasonable excuse for staying indoors during the winter; it's the rest of the year that I struggle and to force myself to go out.

Before my accident, I was on the go non stop. I spent a great deal of time in my car and juggled a lot of responsibilities, in addition to hanging out with friends and family. Spring 2005 was probably the most hectic time in my life. I was always pressed for time, but none the less very happy. At the time, I had my full time teaching career, my apartment, traveled back and forth to PA (to visit friends and boyfriend) almost every weekend, put on three art shows for my students, joined a gym, was attending bar tending school, and taking a graduate course. I still managed to go out and enjoy my free time and genuinely looked forward to spending time with my friends and family (especially my boyfriend). I loved to shop. Even when my down time was scarce, I'd hit the mall and do a little shopping. I never ran short on reasons to buy new clothes! Despite all my spending, I was responsible with my finances and had no debt. I just enjoyed giving gifts and having new things. I was not married and had no children and was making a good salary, so I had no regrets treating myself. I'd have to say, I hit the mall about once a week. Buying clothes was my all time favorite thing to do at the mall. I enjoyed seeing all the latest fashions and had fun trying on clothes. It was always fun and exciting for me to have new things to wear.

I was comfortable with going out by myself, but I preferred being with friends (or boyfriend) most of the time. I'm a people person. Crowds never bothered me, in fact I kind of liked the hustle and bustle of the city. The more people there are, the more interesting things there were to see. I used to go to Manhattan regularly during my college years, for assignments. I could spend the entire day just seeing the sites and watching other people. I loved the diversity of the city and the fast paced nature of the people. Even simple things, like taking the subway, were interesting and fun for me. I could spent hours wandering around the museums. It didn't seem to matter how often I went; there was always something new to see and favorite areas to explore.

I've always enjoyed dancing. I missed out on parties and dancing during my college years (due in part to an ex-boyfriend). I say "missed out" because there were many opportunities and invites to go out that I turned down. I would've loved to be more social in college, but my choice to be with my boyfriend (during college) kept me from going. The positives to staying at home more were having good grades and tremendous focus. However, once I was single again, I found a sense of freedom and exilleration that I had been missing. I went to clubs and bars occasionally on the weekends and had fun dressing up and letting loose. Hanging out with some of my friends required along drive, but it was worth it. Dancing was a perfect stress relief and I had a lot of laughs with my friends. I was usually up for doing almost anything and perferred to go out versus staying at home. Apart from shopping and going dancing, I enjoyed seeing all of the latest movies and spent a lot of time eating out.

I've always piled a lot of responsibilities on my plate, but somehow managed to balance everything fine. I was rather good at time management and being organized, which made it possible to have a life outside of career. When I was still living with my parents, I can remember them getting annoyed at the fact that I was hardly ever around. They felt I treated home as a hotel, and only stopped by to sleep and shower. For the most part, they were right. I've been on the go almost my whole life, bouncing back and forth between divorced parents. I had moved out once, before I had my own apartment. Moving back wit my parents after having lived independently felt awkward and suffocating. I didn't waste much time planning on getting my place. It's not that I have anything against my parents, I just prefer to be free andindependent. I liked the feeling of not having to depend on anyone and the freedom to come and go as I pleased.

The thing my parents didn't realize was how many extra hours I stayed at work, or how many projects I was working on. I was usually the first teacher to arrive, and the last to leave. I never minded putting in extra time, because I loved my job. I was never asked to do a lot of the extra things I did, but they were important to me, and I was happy to sacrifice my time. I wanted my classroom to run a certain way and I wanted to be flexible in helping with responsibilities around school. The year of my accident I put on three art shows, worked on two murals and ran the yearbook club. I attended school even and maintained an ever changing display of my students' work. I don't think anyone in my life (apart from my boyfriend) realized exactly how much I was balancing at the time. I was stressed out, but I was also very proud of my achievements and was happy with my life.

As you can imagine, my life changed drastically after my injury and there are countless aspects of my "old life," that I've lost, or no longer enjoy. My desire (or lack there of) to go out is a perfect example of how my injury has had an impact on my life. Since my accident, the thought of going out is comparable to having a root canal; something you have to do, despite the pain. My apartment has become a safe haven for me, where it is easier to cope with my situation. I have more control over what I let in and it's easier to block things out. In the nursing home I had no peace. I wasn't happy at "home" and I was scared to go out. My computer was my only window to the world and even that was bittersweet. Everything I see reminds me of what I had, what I have and what I want. Every good memory has become painful, to some degree. Every time I leave the security of my apartment I risk being bombarded by reminders of my past and feelings of jealousy, shame and regret over what I lost. I can't help but compare myself to all the people I see. I can't help but feel embarrassed by the help I need and jealous of all the things I see other people doing.

I force myself to go out, because I feel like it's the right thing to do. I have been given opportunities to help other people in my situation through my artwork and I feel obligated to do what I can. I know it's not healthy for anyone to be a hermit. We (humanity) all need to socialize and share experiences with other people. I realize that the only way to keep my friends is to be a part of their lives and contribute what I can to my relationships with them. My grandma sometimes gets sad when her friends tell her about all the wonderful things their grandkids are doing. I understand the resentment she sometimes feels, because I know how hard it is for me to feel happy for other people, while I'm feeling miserable about myself. It's those times that I remind her (and myself) that the world is not gong to stop, just because I got hurt and that friendship is about give and take. Yes, it sucks that I'm paralyzed, but my situation shouldn't over shadow everyone else's happiness. I can''t expect people to mope around over what happened to me, nor do I want them too. I try to put my sadness aside and be happy for my friends, because I realize that everything is not about me. I can't expect anyone to want to be around me, if all I ever do is cry, complain and focus on the negative. I often do things that make me uncomfortable for the sake of my friends and family. If I gave in to my emotions and refused to hangout because I didn't feel up to it, I'd never go anywhere. I could easily isolate myself within a bubble and eventually people would stop inviting me and making an effort to include me. I wouldn't blame them.

My aides, nurses, family and friends all encourage me to go out more than I do. It's not to say that I get no enjoyment from going out; it's just that every experience comes with it's own level of sadness, embarrassment or anger. I try to balance pros and cons in my mind before I decide what to do. There are just certain things that are so uncomfortable that the small amount of fun or excitement I might have is greatly out weighed by my discomfort. Events like weddings and baby showers are outings that rank high on my discomfort list. Therefor, I avoid them, unless the people involved are extremely important to me and worth the inner turmoil. A perfect example of this would be my best friend's wedding. Not only did I attend the wedding, but I had to face multiple fears and tackle new experiences. It was my first time traveling by airplane after my accident. It was my first time to Florida, since my accident. It was also the first time I had to spend a night away from home, since my accident. The trip came with a lot of emotional discomfort, stress and anxiety. I put my feelings aside and committed myself to going, because I knew how important it was to my friends (bride & groom). They had both made a lot of sacrifices for me and supported me more than anyone, the first year after my accident. I refused to let my situation be an excuse and met the challenge head on, for the sake of my friends. There are times when I feel like the outcome is more important than my personal feelings and that I'd be selfish to not participate. I try to remind myself of the bigger picture. If I can give something back to those that are constantly giving to me, I put my feelings aside. If I feel like I can help others by letting people into my comfort zone, I do it.

I think it's easy for people to forget or make light of how different everything is for me. I think it's hard for people close to me to understand why I seldom go out. They compare me to the "old Christina," that was super outgoing and always on the run . That Christina no longer exists. My accident has changed the way I see the world and my desires to interact within it. It's often the activities I used to love the most that now bother me the most. The average, some times mundane things can be stressful and not worth doing for me. Things like going to the mall, grocery shopping, doctor visits, hanging out with friends and going out to eat are common activities that most people take for granted, because they don't have all the extra concerns that I do. In some aspects, I know I can't expect people to understand things from my perspective, because they haven't lived it and often don't know enough about paralysis to consider it.

Every time I leave my apartment I have a long list of things to worry about. Not to mention the fact that I can not just pick up go, on a whim, like before. I can't just pop in my car and go. I need help getting ready. I need special equipment and a modified car (ideally) to help transport me. I always have stress and worry over my catheter and the possibility of incontinence. I also have to consider who can accompany me, or help me at my destination. I have to consider accessibility; whether or not there will there be stairs where I'm going. If so, I have to find an alternate entrance, ramp or elevator. There are places that I can no longer go, because of my limitations. Climbing to the top of the Statue of Liberty comes to mind and luckily I have no interest in doing that. However, even places that claim accessibility are often clueless and poorly suited for wheelchairs.

The average person over looks things like curbs, doors, and the dimensions of most things. I don't have the luxury of ignoring small obstacles, like curbs. Dining out also has the added stress of having to be fed (like a baby) in front of countless strangers and most tables at restaurants are either too high or too low to sit close to everyone else. I find shopping a headache, because most stores cram too much stuff into a space and it makes it near impossible to navigate a wheelchair, without knocking things over, crashing into people (who tend to be oblivious to presence wheelchairs) or access areas all together. Try wheeling around Claire's if you don't believe me, or 90% of women's clothing stores. These days, I much rather shop online than go out. Seeing all the cute things I can't wear, like shorts, skirts, bikinis and high heeled shoes, just irks me and the fact that I can't try anything on takes out all the fun for me. Many of my friends in chairs make light of things and are less sensitive and have the mind set that people in chairs can do everything, just in a different way. While there is some truth to that way of thinking, there is also the reality that there are things that people that can not walk, just can't do. Personally, I put quality before quantity and recognize the fact that no matter what I "do" it will be a compromise. I refuse to put myself through discomfort unless I feel the outcome is worth it, or because I have no choice. Everyone deals with paralysis differently and their personality and life before paralysis plays a big role in their life with paralysis. I think it's important to recognize everyone as an individual and realize that every person's coping skills are different. 

Holiday Stress & Last Minute Gift Ideas

I’m feeling a bit stressed out, which is pretty normal for me during the holiday season. The holidays bring about so many mixed emotions. This has been a stressful time of the year for me my whole life. Growing up with two sets of parents (both divorced and remarried) can get overwhelming at times. You can’t be at two places at once, so you end up celebrating the same holiday multiple times. The celebrating, food and spending time with the family is always great; it’s the traveling & running around that is exhausting. Just getting to see the whole family can be challenging (for big or divorced families), not to mention attending holiday parties with friends and coworkers or spending time with your significant other’s family. Although I still do enjoy the winter holidays, some years I’ve felt like I needed to take a vacation to recoup from my winter holiday (be it school, college or working as a teacher).
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”

I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!